My Journey with Kidney Disease

Category: PKD

Since this blog is all about my life with kidney disease, it might be helpful if I told you a little bit about my disease. I have polycystic kidney disease (PKD). More specifically, I have autosomal dominant polycystic kidney disease (ADPKD). This is a genetic disease which currently has no treatment or cure. Once I reach end-stage-renal failure, my only treatment options are dialysis and hopefully eventually a transplant. The PKD Foundation is currently funding studies for drug treatments that could possibly slow down the progression of the disease in future generations.

You will hear me refer to my kidneys as evil beans because they don’t always behave well. PKD results in fluid-filled cysts basically taking over my kidneys. The average size of a healthy kidney is roughly the size of a fist. PKD kidneys can be as large as a football. My kidneys are already quite large and I have a lot of issues with cyst ruptures. Yes, it is as fun as it sounds. Rupturing a cyst leaves me praying at the porcelain throne while in severe pain. This is why I refer to my beans as evil. Trust me, you would to if you ever experienced the joy of a cyst rupture.

Since this is a genetic disease, it means it either came from your family or you have a spontaneous mutation of the disease. PKD has effected several other people in my family including my father, sister, nephew, and niece. My father was on dialysis some time before receiving a transplant when I was in eighth grade. That transplant continued to work for the remainder of his life until he passed away from non-renal related issues. My nephew was on dialysis just under a year before receiving a transplant from a living donor or super hero as I like to say. It is a toss up between my sister and I for the award for the next family member to begin dialysis. It sucks to be up for an award that no one wants.

There is a fifty percent chance that my children will inherit this disease. This bothers me more than the fact that I’m heading toward dialysis. I don’t want my children to ever experience the issues I have due to this disease. I have hope that researchers will find a treatment that will stop of significantly slow the progression of the disease to help people in the future. Neither of my children have early-onset of the disease. We choose not to complete the DNA testing to see if they have the markers for the disease.

So now you know why I have screwed up beans. This blog will be a place for me to write about my journey with my evil beans and life in general. I have to lose quite a bit of weight before I will be able to qualify for a kidney transplant. The plan is to have the weight gone before I begin dialysis. That might be easier said than done, since my renal function continues to decline, but that is what I’m shooting for. I might have evil beans and will eventually be on dialysis, but I refuse to let that keep me from doing the things I want to in life. I’ll also write about the adventures I have along the way that have nothing to do with my kidney disease. Sure, I have PKD, but I’m not going to let that stop me.